Just diagnosed - Polycythemia Vera

[Erica]

Oh @Meli I am so glad your first venesection went OK yesterday
I think the unknown is often the scary part, please do keep posting.
Look after yourself

[Ela]

Hi, does anyone here diagnosed with Polycythaemia vera (PV) with splenomegaly?

[Ela]

Hello., anyone here who has Polycythaemia vera (PV) taking Ruxotinib?

[Rammie18]

Hi @Ela

I’m currently taking this for about 2.5 months.

[Ela]

Hi @Rammie18 how are you now since u start the ruxotinib? Why your GP prescribed you that meds? Do you have hepatomegaly and splenomegaly? How is your hemoglobin now?

[Rammie18]

Previously I was on interferon then hydroxycarbamide but i was experiencing some mild symptoms on hydroxy which if there was no alternatives I would’ve been fine to live with.

Doing ok I think on ruxolitinib, feel my energy levels can take a hit but it seems my levels are doing well and stabilising which to be honest was the same while on interferon and hydroxy.

No issues with spleen but I know it’s very common with people with Polycythaemia vera (PV) having enlarged spleens.

I’m being monitored regularly with larger gaps between appointments when things are looking good.

Hct levels are under the threshold of a venesection and they’ve recently upped dosage of ruxolitinib as I’ve passed the initial stage where side effects appear more noticable

[Ela]

Hi @Rammie18 what is the initial dose of you ruxotinib? Did you have blood transfusions since you started the ruxotinib? Im just so worried to take the meds

[Rammie18]

Hi @Ela

I was on 10mg once a day now after 8 weeks I’m now on 20mg.

I think close to starting ruxolitinib I had a venesection as my hct creeped up to 0.455

Regarding symptoms/side effects, I believe the initial feelings I had was from stopping taking hydroxycarbamide.

In my own experience of taking all three, I found all did what they were intended to do but I was probably experiencing more from hydroxy than from interferon and now ruxolitinib.

It’s all scary when you read up on it and it’s finding the right meds for you.

I know of many who believe interferon is best, lots of people who say hydroxycarbamide and tonnes of people who say ruxolitinib. There are also lots of peoples experiences of people who’ve struggled with one or two.

Unfortunately one shoe doesn’t fit all.

I was proper scared moving onto chemo and did what I did to avoid starting it, but at the end of the day, my Haematologist said do you want a short term fix or a long term fix… a choice that effects quality of life but extends your time, or the opposite!!! I think him saying that really hit home…

I think as much as it’s great to do your own research and hear people’s experiences you will ultimately find what you want to hear if you wish it. A reason to do it and a reason not to.

When it comes to meds, the side effects are given so you know what “may” happen and all its chances based on trials. Knowledge that if you go on it tells you what may happen but that gives you something to report back to your med team to find out if it’s a “phase that will pass” or something that your body isn’t agreeing with. I now see meds like going to the gym… it’s daunting to start but with time becomes imbedded and part of a routine for it to be normal practice.

If you’re anxious, go for the lesser of the evils.

You can always get a 2nd opinion when choosing medication but often med choice isn’t drawn out of hat and will be based on many factors such as age, health, experience, data, levels, convenience and time to take effect.

Hope this helps and if you have any questions please do ask as I’m more than happy to try and answer from a patient experience. Also the bcuk support line are an amazing bunch of helpful and knowledgeable people

[Ela]

Thank you @Rammie18 … i am still thinking if i will start my ruxotinib or not. Im so so so scared for the side effects

[Rammie18]

@Ela

I was really nervous and still get very anxious when changing my medication enters the conversation.

I’m not sure if I’ve already suggested this but these videos reassured me at the time when I when getting a bit overwhelmed and wanted some reassurance and knowledge

A Conversation with an MPN Specialist: Polycythemia Vera

This videos specialifically mentions splenomegaly

PV: Treatment With Ruxolitinib

Apologies in advance if that makes things worse or adds more to worry about… never my intention.

[Ela]

Thank you @Rammie18 … big help ! …maybe this is how nurse like me overthink actually ive tried herbal before and it helped lessen the symptoms… anybody knows PPARS? You can read in google

[Ela]

Hi @Rammie18 why your GP increased your dose from 10mg to 20? I think i really need to follow my gp to start Ruxo coz my spleen and liver are both enlarged

[Rammie18]

It wasn’t my GP who made the adjustment its was my Haemotologist at the hospital who makes the big decisions

Because after 8 weeks I was tolerating the ruxolitinib without much side effects and levels have stabilised. I’ve been on 20mg for 6 weeks and got a review in 2.

It’s come to my attention that increasing dosage is not always a bad thing but easing the body to the optimum dosage or seeing how your body is reacting to the medication.

Yes, it’s incredible vital you keep an eye on your kidney and liver function as well as any increase in spleen.

I’m not sure how to check/notice a change in spleen size as I’ve heard it’s not always noticeable?!

Definitely worth writing down or keeping a track of how you’re feeling or changes.

My GPs (never see the same one) though aren’t bad but are useless when it comes to my blood cancer so now I just use them for general short term issues and use my med team at hospital for any issues relating to my cancer

[Ela]

Hi @Rammie18 … if it stabilized to 10mg then what do you think they had to increase the dosage? How are you now taking 20mg ? Me, just done my blood test and the results are all normal, only on my ultrasound have big spleen and liver. Still notyet starting the ruxo as i am so worried for the side effect maybe i cant go to work because of the side effect?

[Rammie18]

I believe the notion is that the ideal dosage differs from people to people.

Lots of factors can have an influence on your optimum dosage for maximum effectiveness.

Like with many daily medication your body can/may start to fight back.

I see it like running a 5k. If you’ve never run before you may struggle on a treadmill to do a time under 25mins however over time you may start to increase the speed, you running the same distance but at a more optimum speed that your body over time can handle potentially getting better results more efficiently.

So far I’ve had no major/notable side effects and back at work but did take time off work while coming off chemo tabs and starting ruxolitinib in case I did incur any side effects.

I think giving yourself time and space to adjust to new/change is meds is wise and sensible for all parties

[Ela]

Hi @Rammie18 how are you now? Are you still on ruxolitinib? Got my meds today (ruxolitinib 15mg/tab) … but i didn’t start yet cause im so afraid for what maybe happen to me aftr i take ruxo do you still have side effects now while taking ruxolitinib?

[Rammie18]

Hi @Ela

Hope you’re well

Funny you ask that question as I had my 4month review on ruxolitinib today

Levels are doing really well and my hair is less thin and nails have returned to normal colour.

On the downside my fatigue has been felt though that may be due to the hot/warm weather but blood test showed my iron is in the low single digits.

So as my levels are really good, my haematologist has offered me an iron infusion as I can’t absorb tablets which I’ve had before and gives me a huge boost!

I started on 10mg twice a day now on 20mg twice a day!

Out of the three treatments I’d say ruxolitinib is on par with interferon in my personal treatments choices.

Can I ask what are your main worries/fears of ruxolitinib?

[Ela]

Hi @Rammie18 thank u for answering, i am worried cause ive read some people taking ruxolitinib lowered the hemoglobin and they have to undergo blood transfusion, i am worried cause as of now all of my blood test are within normal level just my splenomegaly and hepatomegaly are my problem, maybe if i take ruxo my hemoglobin become low like other patients taking it. I have work and i dont want blood transfusion.
My hematologist advised me to take 15mg/day

[Rammie18]

I think it maybe worth asking to start on a lower dose maybe… if anything to ease your concerns and esp if your levels are looking normal

Maybe worth speaking freely to your clinical nurse if you feel like your haematologist isn’t listening or dismissing your concerns

If it’s any help my levels only hover around the 0.45 often 0.43-0.44 and that’s with 40mg of ruxolitinib

They will also monitor you regularly to get the right dosage and allow your body to cope.

I started on 20mg (2x10mg) and had a venesection once so it didn’t massively drop my levels initially

[Ela]

Thanks @Rammie18 … may i ask 1 more time, what are the pros and cons of ruxo to u? Did you feel difficulty of breathing or joint pain? Do you think people taking ruxo still live a normal life like go to work or gym?